Seronegative all symptoms/all negative BE and EMG/RNS
Hi everyone, I am new here and also new to myasthenia gravis. I have all negative bloodwork and a negative EMG/RNS. The original neuromuscular neurologist that saw me was very cruel to me, telling me there’s no way I could have this. It was my scleritis that I had just been diagnosed with causing everything…
I went to my neurologist that has known me for years treating me for my migraines, told him all my symptoms, told him how I had had a great response with Mestinon, told him how everything was started because I was put on a high dose of prednisone, and he diagnosed me on the spot even with a negative EMG/RNS. That was five days before my next exacerbation from another high amount of prednisone from a different eye doctor for the same eye issue…
I had to go to the ER because I was having trouble breathing and they admitted me for “myasthenic crisis “. It was all very scary. I don’t know how you guys deal with this all the time. Thankfully, I didn’t have to be intubated, but they started IVIG5 days worth. I was feeling better in the hospital, but as soon as I got home the day after all my symptoms were back and it seemed like my Mestinon was not working as well as it had been before although it was working, thank God because if it hadn’t been, I would’ve been in real trouble… I’m nervous now… My doctor is leaving the practice and he is giving me to a neuromuscular neurologist in the same practice… I’m so afraid he’s going to want to do all new testing and then reverse my diagnosis based on everything being negative…
Long story short to my question… Or maybe questions sorry thanks for your patience…
1) Have any of you had the same situation where you were completely negative for everything (including SFEMG ) but you were diagnosed based on symptoms and medication response?
2) anyone been switched to another neurologist in the practice and have their diagnosis reversed?
3) Anyone have IVIG Work the first time and then not the second time?
Thank you so much for answering any and all of the questions I have. I know it’s a lot. I appreciate you in advance. I feel so lost and alone right now. I know I’m not crazy… Just saw my eye doctor today who is an autoimmune uveitis specialist and she wrote in the note. “diagnosis: myasthenia gravis.” I don’t know. I’m just scared thank you.
Same here. I went through years of changed and misdiagnosing. Even my neurologist now isn't certain if I have mg. His diagnosis is chronic peripheral neuropathy. But i do get IVIG 5 days a week once a month. My signs and symptoms are all the same as everyone else in here. I've been diagnosed with mg 3 times and told by 3 other doctors they didn't think I had it. To start with my first neurologist said I had ocular mg and it wouldn't turn into full blown mg. Boy, was he wrong! It's hard to find anyone you can trust that knows anything about it. All I know is that i get the same treatment as an mg patient and I feel like I have it. If it's all in my mind, I wish they'd tell me how to get it out of there
I'm exactly the same. Except I haven't had an er visit. I have had issues with swallowing. My Dr said that was something else.....right. I had trouble breathing two nights ago for about 20 minutes. It probably was only 5 minutes because I think it started a panic attack. He doesn't know about that. Why tell him? I also have tested negative for everything, yet check every box right down to seeing double and having a heavy, painful left arm at times. Wow. My body must really hate me. It just will not cooperate. I'm having bowel issues that I know have yo stem from this somehow. If you find answers, let me know.
A couple years ago I was diagnosed with myasthenia gravis even though I had all negative antibody tests. Thank goodness, my neurologist, who is a real expert on MG treated me based on all the symptoms that I was showing. I take Mestinon and participate two times a week in a special exercise program designed for me as a person with MG.
I have had all the same situations as you. My neurolgist put me on prednisone and mestinon but both caused my pulse to go below 52 so was weaned off both. I started IVIg in a clinic situation with very good results. The Tylenol and gravol help with the problems created by the IVIg.My Dr. asked if I would be comfortable with SCIg which my daughter adminsters subcutaneously every week for me. I has helped tremendously and can have it done in my own home.
that’s so great!
